POS0571 ASSOCIATION BETWEEN DIAGNOSIS DELAY AND DISEASE ACTIVITY WITH BURDEN OF THE DISEASE IN 4150 EUROPEAN PATIENTS WITH SYSTEMIC LUPUS ERYTHEMATOSUS
Authors: A. Cornet, J. Andersen, F. Marchiori, A. Sturiene, A. Edwards, P. Mertz, L. Arnaud
Journal: Annals of the Rheumatic Diseases (2023)

<h3>Background</h3> Despite significant improvements in diagnosis delay and treatment strategies, the burden of Systemic Lupus Erythematosus (SLE) remains high. <h3>Objectives</h3> The objective of the study was to assess the association between diagnosis delay, disease activity and burden on daily life (BoDL) in a large sample of European patients with SLE. <h3>Methods</h3> In May 2020, Lupus Europe, the European umbrella patient association for SLE, conducted a multilingual anonymous online cross-sectional study to individuals with a self-reported physician's diagnosis of SLE living in Europe. The BoDL score was computed using 1 to 5 Likert scales on 5 domains (mobility, anxiety/depression, self-care, daily activities and pain/discomfort) and the sum was transposed on a 0 (minimum Burden on daily life) to 100 (maximum BoDL) scale. Comparisons between independent groups were made using the Mann-Whitney test for continuous outcomes and the Chi-2 test (or Fisher's exact test) for quantitative data. <h3>Results</h3> Data of 4,150 SLE patients from 35 European countries were analysed. The mean (±SD) BoDL score in the study population was 37.8 (±18.7) with a modest downward trend of the BoDL based on age (from 33.4% to 42.1% from age less than 25 to age 65 - a loss of up to 9% points over up to 40 years). The diagnosis delay was reported to be &lt;2 years in 1903 participants (47.5%), between 2 and &lt;5 years in 1056 (26.3%) and ≥5 years or more in 1049 (26.2%). 142 did not answer.. Those with a diagnosis of SLE within 2 years of first symptoms had significantly lower mean Burden on daily life scores than those diagnosed after 5 years (33.6 versus 44.0, p&lt;0.001). This trend is deemed robust as it was found across almost all European countries. These results highlight the importance of improving current diagnosis delay for SLE as a way to improve the burden of the disease on daily life. A total of 2980 (71.8%) patients felt that their "lupus has been under control over the last 3 months" while 1166 (28.1%) did not. 4 did not answer. The Burden on daily life score was significantly better in SLE patients feeling that their lupus had been under control during the past 3 months versus the others (34.0% versus 47.6%, p&lt;0.001). Again, this trend was found across almost all European countries. <h3>Conclusion</h3> This large patient survey reveals both the importance of prompt SLE diagnosis as well the relationship between disease activity and disease burden upon the daily life of European lupus patients. Further improvements should focus on reducing the diagnosis delay and identifying new therapeutic strategies for those with uncontrolled disease. Healthcare pathways, which may accelerate diagnosis and optimize therapeutic management, are necessary to improve patients' outcomes in SLE. <h3>Reference</h3> [1]Cornet A, Andersen J, Myllys K, et al Living with systemic lupus erythematosus in 2020: a European patient survey Lupus Science &amp; Medicine 2021;<b>8:</b>e000469. doi: 10.1136/lupus-2020-000469 <h3>Acknowledgements:</h3> NIL. <h3>Disclosure of Interests</h3> None Declared.